PICU, Day #6

It is hard to believe that she has been here at TCH for one full week now.  Tomorrow will be the beginning of the second week.  Geez…

For the most part, today was a status quo day.   She did a trial CPAP test for 60 minutes to see how she would tolerate a CPAP off the vent.   She did well on that.  Their hope, as of this morning, was to do another CPAP trial test tonight for 60 minutes and then if she does well, then extubate her tomorrow.

Sounded like a great plan up until about 3 hours ago when I went to visit her, and she had spiked a fever of 103.5.  She had been at 99.8 and 101.8 since we had been in the PICU (Wednesday), so this was an unwelcome surprise.  They took urine, blood, and sputum cultures and sent them off to be grown out to see if her Adenovirus is kicking up a notch or if something else is brewing.  Honestly, I hope she caught something bacterially so it can be treated with antibiotics, but who knows.

They gave her tylenol, and about an hour later she was back down to 100.4.

The nurse thinks they are still planning another CPAP trial tonight and possible extubation tomorrow.  However, I am a bit nervous about extubation tomorrow.  Screw that, I am HELLA nervous about it.  I have heard other Gaucher family stories about extubation leading to reintubation because of laryngospasms and even trachs as a result of it.   I’m a nervous wreck right now just thinking about it.

We will see how she does overnight.  At least if they extubate, they know what they are prepared for, as they are going to be bringing ENT in just as a precaution.

Another problem that they are having is trying to keep her sedated.  They are using continuous fentanyl and versed with ‘as needed’ fentanyl and versed plus they even tried choral hydrate and pentabarb today.  Nothing seems to last and give her good sedation anymore.  Most likely it is because she is hypermetabolic, but it sucks see her so agitated and unhappy.

She is definitely getting more restless and agitated.  She has gotten out of her wrist restraints a few times now, and she just wants that tube out.   I feel horrible because she looks at me, and I know that she is wondering why she has this tube in her mouth, why is she restrained, and most of all, why the heck am I not picking her up!

I will admit that it is starting to take a toll on me.  I have not hugged my baby in almost a week, and all I can do right now is hold her hand, rub her forehead, or find another 2″ space on her body that is not covered with a tube, wire, or lead.  I want to hug her so badly.